It's a very special anniversary for me: I haven't had solid food in my stomach for six months as of 9:30 this morning. [This is a very long rant, please no medical advice.]
Before I begin- Again, please no medical advice or suggestions. I am going to the Mayo Clinic in March and I will get their advice and I am just going to ignore any medical advice posted, sorry. Please no pity party either, I'm just angry and need a a place to rant and vent, that's it. Feel free to ignore this post and move on.
So... starting in about January of 2023, I started dry heaving almost every morning and this has happened ever since. Nothing has ever come up. Within five minutes of getting up in the morning, I dry heave. Sometimes once, but sometimes a few times.
In March, I stopped eating for six weeks. It's not like I'm too nauseated to eat or I feel too full to eat, I just do not want to eat. Period. I've explained it to others like this- would you be able to eat a turd? No. That's how all solid food feels like to me. I can't even force myself. It's a total aversion to food. Even the smells of food can trigger it, especially savory smells like onions, cooked meat or cheese (meaning I hide in my office in the garage when my wife and daughter have pizza). My current doctor has described it as anorexia but with a physical cause.
I went to urgent care, they told me to go to the ER because they couldn't give me the diagnostics I would need. I went to the ER. They gave me X-rays, they took labs, and they did a couple of other tests I can't remember now and sent it all to my doctor (who I've since gotten rid of because she was worthless). She told me there were no results, but to be sure I also needed a CT scan, and my insurance wouldn't let me go to a private facility, so my only option to get it quickly was to go back to the ER the next day and get one. Incidentally, the first day was an 8-hour visit and the second day was a 6-hour visit. Hooray American healthcare system.
I got prescribed various anti-nausea medications, which were of no help because I had no nausea. I ended up living on Ensure and Gatorade.
Anyway, by mid-April, I was eating again. It just suddenly happened. I felt like eating, ate some crackers, and I was fine with an appetite again. I still heaved every day, but I was fine.
I also had to do a colonoscopy the next month, and just to be sure, I scheduled an EGD where they check your stomach as well. They found an ulcer. Finally, an answer! Nope. They did another EGD six weeks later, the ulcer was gone and I was still heaving.
No one knew what was wrong, of course, but it seemed less urgent. I scheduled a bunch of tests and, since this is the U.S., they were scheduled for months later and the summer started.
Then, in August, on the morning of August 20th, it all changed. I got up, ate some cereal, and that was the last thing I ever ate so far.
Back to the doctors it was! This time, I got a head MRI in case it was neurological, as I do have a rare nerve disorder as well (trigeminal neuralgia) because I won the fucking genetic lottery. Nope, MRI showed nothing. My neurologist actually said my brain was the most healthy she'd seen in a while. So that didn't work.
I couldn't keep taking time off of work, so I took FMLA, a law that allows you to take up to 12 weeks off, unpaid, for health reasons and have a guaranteed job you could come back to. It is actually paid for bigger companies, but if a company has under 50 employees, which mine did, no pay.
12 weeks went by and I just had to end up quitting. What else could I do? I was glad because I hated that job and I was able to put my very bullied daughter into online school and supervise her, so there were good sides, but we're down to a single income now with ever-mounting medical debt despite having "good" insurance.
Anyway, back to the medical situation! I had a HIDA scan. That tests for gallbladder issues. The HIDA scan suggested that might be a problem. So, again, hey, a solution! I had my gallbladder out just before Christmas. It's a simple surgery and you can recover from it with almost no trouble because the gallbladder can be removed like the appendix. I was hoping I'd wake up hungry. No such luck and my gallbladder was healthy.
At this point, most of the doctors basically threw up their hands and said they didn't know what to do and I applied to go to the Mayo Clinic. For those of you unfamiliar, it's one of the best hospitals in the country and it specializes in cases no one can figure out. Sort of a real-life House situation except with lots of doctors instead of one asshole. They accepted me and I go on March 22nd. I was going to have to do a GoFundMe for the trip, but my 81-year-old mother, who is relatively well-off, said she would go with me to be an advocate and take notes and also pay for an AirBnB. I don't really want to drive 8 hours up to Minnesota with a semi-crazy old lady, but at least I'm saving money.
Obviously, it's been very hard on my family. On top of general worrying about me, I can't go out to eat with my wife and daughter because I'm concerned I won't be able to handle a restaurant's smell. I can't even get them fast food. My daughter wanted a meatball sub and I had to tell her I couldn't get it for her because I couldn't handle going inside and I couldn't handle the smell as she drove it home (my wife got it for her later, but I hate telling her I can't get her food). On top of that, I have to request they turn the kitchen fan on when they eat or I won't be able to come back into the house. I usually go to my mother-in-laws' house on Christmas, but I couldn't because there would be a whole bunch of food there.
I wish I could eat. So badly. For so many reasons. I keep seeing food ads and think of how good it would be to have them (in an abstract sense, I wouldn't be able to eat them if they were in front of me). A Nepali restaurant opened in town. I have never had Nepali food, but I love Indian food and I love Tibetan food and Nepal is between them. I drive by it all the time wishing I could have just a tiny bit.
The weirdest part? I feel fine almost all the time. I have very little energy obviously (I do try to exercise), and there's the heaving part, but I don't really feel sick most of the time. Also, I can brag that for the first time in my life I'm just 5 pounds above my BMI ideal weight of 180 pounds. Before I got sick, I weighed 260 pounds. Also, I don't have high cholesterol or high blood pressure anymore, so I guess there's a silver lining? Buying a whole bunch of new pants because none of the old ones fit anymore kind of sucked though.
Anyway, that's my story. It's six months since I've eaten today. My "diet" consists of- Tea in the morning, Ensure four times a day for the nutrition, Gatorade twice a day for the electrolytes, V8 twice a day for the fiber (I have to drink it while holding my nose), and as a treat, either root beer at home or a chai latte out somewhere. Also, I might have gotten the order of things wrong, sorry. There's been so much that I've had to go through.
Six months. I'm going to celebrate by not eating some cake.
Edit: Hooray having a terrible memory too, my mother reminded me this morning that I go on March 26th.
As someone who also struggled for years with unknown health issues related to food, I wish you the best and hope you manage to find some answers
Thank you. It sounds like you did find answers and I'm glad to hear it.
I found 75% of my answer, I suspect there's still something else. Someone casually mentioned histamine intolerance to me and I had a "holy shit" moment after reading the signs & symptoms. The Wikipedia page didn't even exist until 7 years after I started trying to figure it out, all I knew is I got migraines all the time and just generally felt like crap.
It's amazing how little we know about the human body still.
I know this!
We had a student when I was at a university who could only eat 5 things on this planet because of his histamine allergy: zucchini, plain white steamed rice, unseasoned chicken breast (and I forget the other 2) but after a couple years he was able to add a couple more things to his diet- each item was celebrated by the staff.
Grest kid, extremely positive about his condition, and usually in a good mood!
I hope you find some answers soon OP.
I knew someone allergic to corn. Which is not only in tons of processed foods, but also used in things like building insulation. She was WFH years before that became a thing because she got special dispensation.
I had the same issue, I only had a few safe foods. I have a mast cell related disorder. I'm on a slew of meds to help, but the thing that helped more than anything else was getting my chronic, 24/7 stress under control. It turns out being keyed up all the time isn't good for you. Who knew?
That sucks, but I'm glad you found at least a part of the answer. Migraines are awful. The nerve disorder I mention is kind of similar to migraines and it's initially what they thought was the problem with that (that also took ages to figure out), so I absolutely sympathize.
Similar story. I have this: https://en.wikipedia.org/wiki/Eosinophilic\_esophagitis
Wikipedia case mentions the first case being diagnosed in 1978 and it only being recognized as a distinct disease in the 90s, in large part I suspect because many of the symptoms might be from something else or waved away. Also you're only likely to find out you have something like this, if your symptoms are bad or worsen significantly. Otherwise it's your normal.
Fascinating how little we know about the human body, tbh.
Just chiming in as a fellow sufferer of Eosinophilic esophagitis. I'm lucky so far at least in that just basic long term antacid treatment has been enough but we haven't figured out triggers.
Good job getting an appointment with Mayo Clinic! I know this has been really tough for you and I hope you get some good answers. I also look forward to hearing about your progress.
I'd also like to take a moment to appreciate the fact that you're going to the Mayo Clinic for your issues with food. If the universe is paying attention, you'll hopefully somehow cross paths with Dr. Burger or Dr. Ham.
That's great! We had a Dr. Slaughter and a Dr. Nice at the hospital in the town where I grew up. There was also an allergist named Dr. Ruff. Dr. Ruff was really, really nice as was Dr. Slaughter. Dr. Nice was not all that nice.
There was also an optometrist named Steven I. Ball.
Was Dr Slaughter a paediatrician? If so, we may have the same home town. There was also a Dr Blood (oncologist) and Dr Bones (psychologist).
I only saw him in the ER, but he might have done pediatrics. I don't mind telling people where I grew up, it's not really doxxing myself. Bloomington, Indiana.
That means there's two Dr Slaughters. I'm in Auckland, New Zealand.
I guess the Slaughter family is spread out across the world but maintains an interest in medicine.
I’ve met a gastroenterologist named Dr. Brown
This sounds made up, but even if it was, I wouldn't mind, it's too great
Also, get well soon!
Thank you, and I swear it isn't.
In fact, I can offer some proof from some posts I made on another forum, although it also shows that I got the order and details of stuff happening all screwed up in lots of ways. Like I thought I stopped eating for 6 weeks in March. Apparently it was 21 days. Oops. It's been a long year. I'm glad my wife has all this stuff written down or I'd be fucked.
https://forums.mst3k.com/t/whats-your-problem-a-thread-for-griping-part-2/28111/889?u=flyingsquid
https://forums.mst3k.com/t/whats-your-problem-a-thread-for-griping-part-2/28111/989?u=flyingsquid
https://forums.mst3k.com/t/whats-your-problem-a-thread-for-griping-part-2/28111/1344?u=flyingsquid
Etc.
Just to be clear - the names of the doctors sounded made up, not your condition!
Oh, gotcha.
My professional medical advice as a medicinal professional is to hey hey hey hey smoke weed every day
As someone with a medical cannabis prescription for chronic pain, and absolutely no medical background, I fully agree!
For me, quitting cannabis improved my condition but never got rid of it completely. It gets worse if I smoke consistently, I expect I might have been having something similar to CHES(?) (cannabinoid hyperemesis syndrome or something like that) which was worsening my symptoms. It's never been as bad as it was when I was smoking, but it's never gone back to normal.
I'm a big believer in medical cannabis and use it myself all day every day for chronic pain can confirm it's amazing
I've seen you all around lemmy, and always enjoyed your takes on things. It's crazy to learn that you've been going through all that all the while. I hope things get better for you, man!
Thanks, I appreciate it!
Been fighting a dying pancreas since 2016. Dropped from 212 to 120lbs. My body doesn't Absorb the food I injest. Pancreas dumps awful amounts of acid into my stomach. I throw up almost daily sometimes up to a dozen times. I take very expensive pig enzymes to compensate for my body not absorbing food. It's an absolute mess. I feel your pain. At 40 I'm feeling pretty bleak. Hang in there. Pancreatitis is a terrible thing. Especially chronic
I'm really sorry to hear that. I'm 46, so I definitely understand the bleakness at this age. My grandmother died of pancreatic cancer and died in agony. I'm not sure how similar that is, but clearly getting diseases of the pancreas is pretty awful.
Is a transplant a possibility?
Probably not here for me in America (F yeah!). I've been hospitalized with multiple over night stays like 18 times or so since it started. They took my gallbladder for good measure... it was fine... should have left it. Lets throw paint at a wall and see if it sticks! I'm fine. People deal with way worse. I just hope you and yours are as good as you can be.
Sounds like fun. And yeah, they should have left my gallbladder in too, but it's not like it's necessary, so I'm not too broken up about it. And I hope the same for you and yours!
I knew someone who went over a year without solid food. They have only recently started introducing solid foods, which is slow and very controlled.
They were diagnosed with Avoidant Restrictive Food Intake Disorder (ARFID). It caused them, through this eating disorder, to struggle to engage with solid food.
Of course I'm not saying this is what it is (I'm not professional!), and I wish you the best in your journey. What I want you to know is there is so many good professionals out there, as well as liquid based foods that act as supplements in the meantime. Be the best you can be and enjoy life as much as possible as you conquer it.
All the best
Thanks very much. Who knows, it very well could be that. I just hope it gets sorted out at Mayo.
ARFID was my first thought too. My partner has it and it’s pretty intense.
Very sorry you're living with it in your household. It's a such an incredibly powerful thing. I couldn't believe how texture, colour, presentation, sound - so much! - all played into making life difficult.
We take a good meal for granted.
Good Luck on the clinic!
Haha, I get what you're saying, but it's not that I don't realize that, it's that I would happily eat what they represented.
Does a real Big Mac look like the one in the ads? No. Would I eat it? Absolutely. Was it something I ever ate when I could eat? Nope.
But when I see the ad, it makes me wish I could eat a Big Mac that looked like a real Big Mac.
Anyway, thanks!
Maybe you should try getting COVID so you can lose your sense of smell lol.
That's really a bummer but also a super interesting case. Can't wait to hear about Flying Squid disease in a medical journal someday lol
I got COVID in between bouts of not eating, so that was fun too. Good news? Most of the symptoms only lasted about 3 days. The bad news? At the end of that 3 days, I dry heaved like 20 times in a row. My wife was terrified. And then I felt fine again. 🤷♂️
There's also this side effect of covid called parosmia, where everything tastes/smells rancid:
https://www.mainepublic.org/health/2021-08-19/parosmia-the-perplexing-long-covid-19-condition-that-can-make-food-taste-and-smell-rancid
Honestly, stuff like that is incredibly frustrating. We take eating, drinking, breathing, pissing and shitting for granted. So when when suddenly you can't, it's scary.
Whenever I get really sick, which happened with Covid, this happens to me but not for every single food. Just a lot of food tastes rotten. Fortunately the last time it only lasted for about 5 days. The worst is anything with vinegar in it, which so many foods use in small amounts (sauces, etc.) but becomes inedible.
Damn dude that sucks! I hope they can figure out what's going on with you and get you sorted, that sounds like a pain!
Thanks. It is a pain. But like I said, I feel fine most of the time so most of the pain is psychological- wishing I could eat stuff I see that looks good (or even not that good, my daughter got Peeps for Easter and I thought "I'd eat a Peep or five.") and not knowing what's wrong.
Obviously, that's not nothing, but at least I'm not in physical agony or anything. And my family has been very supportive.
Well, I hope your cake looks really delicious!
And that the Mayonnaise clinic helps you out.
Maybe if I bring them the cake. And make it a mayonnaise cake.
I hope the Mayo Clinic can help you out dude. I always enjoy chatting with you on here and reading your takes.
I hope so too. Thank you!
Do you not know what to say when people compliment your weight loss?
For no reason any doctor could tell my body decided I needed to be in extreme pain whenever I ate solid food.
So I went from 230-130, and people will be like "wow you look great!" And it's just like "thanks! My body has betrayed me and I'm very confused!"
Luckily I got some medication that let's me eat rice and veggies.
Fingers crossed for you! Maybe they'll just evict your stomach!
Thanks very much and I'm sorry to hear that.
The funny thing is, I still look kind of fat. Like I still have a big gut despite being almost at a supposedly ideal weight. I definitely look thinner, but I don't look average in terms of weight.
How people hold weight is wild.
I'm curious if you'll get a crazy "we're gonna fix this!" doctor!
That's how my sister got a gastric bypass to treat her gastroparesis! (It worked, because her stomach got fired.)
Then another person I know somehow had the ability to vomit removed?? (Instead of vomiting they are now just nauseous all the time and can't vomit)
Like the way they treat stomach issues is truly WILD. They just don't know what is going on with that organ do they?
That sounds absolutely horrible. I don't know how I could live with that.
As far as a crazy doctor like that? Sure. Why not? I'd rather have a guy like that than the GI surgeon I had who basically threw up his hands and said "I don't know what the issue is!" He didn't seem to give a shit that I wasn't eating either. Like over and over again I'd leave a message saying "I can't eat" and I'd get a response telling me to eat small, healthy meals and not smoke weed.
Ugh, yeah. At least the crazy "we are gonna fix it" docs keep trying. My sister's crazy doc laid out a 6 step plan where the last two points were "feeding tube" and "build you a new stomach with a gastric bypass". The feeding tube worked, which made him confident replacing her stomach would fix it.
Compared to the doctors who just keep prescribing the same meds and saying to eat lots of fiber. Like do you think I'd be 50 visits and 6 docs in if fibercapsules helped?
Fingers crossed you find yourself a doctor with a unique thought that isn't gonna give up so easy!
Thanks!
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Thank you very much for what you have to say and I appreciate it.
American healthcare does suck donkey balls, but I am glad that you are able to find a source to get the diagnostic aid that you need.
Knowledge is power, so whatever the cause, if you can find ways to deal with it (like somehow eat food that has no smell? well you already said crackers don't work... but if you can find SOMETHING) then that would be great!
Thank you. As for finding something as bland as possible, my wife gave me a single piece of cooked spaghetti. I tried really hard to eat it, but I had to spit it out pretty quickly. I ended up in tears because I thought she was blaming me for it as if I wasn't trying hard enough, although she says she didn't (it really felt like she did).
Unfortunately, smell doesn't matter. It's food. I have to chew and swallow it. And even if I have to swallow it without chewing it, like applesauce or yogurt, it's still food. I can't explain it better than that. Ensure is about as thick a liquid as I can handle.
Fwiw, she was probably just frustrated by "the situation" - like how you wanted to be able to provide food for your daughter, but could not. It's gotta be rough and I hope they can find a fix for it ASAP, even if only in stages and that may take some time as well.
Probably. She has every right to be frustrated. It was just a very inopportune time for it.
You feel what you feel though. Both of you did.:-)
For sure.
Maybe look into Soylent drinks. It's nutritionally complete, as in you could just drink that and not supplement with Gatorade or V8, and it comes in different flavors. You can order from the website or buy at Target and other retailers.
Yes, I know it's a movie about people being recycled for food. The guy who invented it was a software engineer who wanted something easy, simple, and nutritious that he could take for lunch while working, and he thought it would be funny to name it Soylent.
I've been taking the powder and drinks for several years now. Favorite drink flavor is strawberry.
How thick are they? That's the biggest issue for me.
I can’t say anything about Soylent but it might be a good substitute. I thought there was some kind of issue with them (I think their target market was the “code academy” types), but I might be misremembering.
However, I can recommend Boost. It has something like 100 more calories than Ensure, and like Ensure I can down a bottle in a single go.
I’m currently going through something similar (although I did mostly stop getting sick in the morning), and I’m toggling back and forth on the solid food thing. I’d be interested in learning more about your diagnostics.
Sure. I'd be happy to help. I will try to remember to reply to you after the Mayo Clinic to let you know what's up. Or if you want to PM me, I can give you my email address. I have a really bad memory, so please shoot me a reminder. Mayo could take up to 10 days and I have to check in on the 22nd, so if you check in with me 10 days after that either on Lemmy or by email, I'll let you know what happened.
Thanks! I will check back.
Hey, remember my bad memory? My mother reminded me this morning that I'm going on March 26th, not March 22nd. It's etched in my mind as the 22nd.
It's not thick but not thin. I would say it's similar to melted ice cream.
Hmm... sounds about Ensure level. Worth checking out anyway. Thanks.
You could thin it out with water too. Soylent comes as a premixed beverage or as a powder if you want it cheaper.
They are very similar. Boost was my go to when I couldn't stomach anything but rice.
The thickness is my biggest problem, although flavor is an issue too, even if it's an underlying flavor or an aftertaste. Muscle Milk had such an awful aftertaste that I had to brush my teeth.
I second this! Soylent is a great meal replacement for me too personally
Can I ask a question? Are you on any medication?
Yes. Three things. All neurological. And if that is the problem, I am seriously fucked.
Is one naltrexone?
Nope. Lamictal, Lyrica and Cymbalta. All for my trigeminal neuralgia. And the pain didn't get handled until I was on all three (and used cannabis on top of it).
If it is one of those three, I will have to stop taking them one by one to see which one it might be. And be in agony for months.
It's entirely possible. I've been prescribed lyrica and cymbalta for neuralgia, and they were the absolute worst. (Cymbalta made everything smell like vomit and food tasted like ash. I had trouble keeping anything down.)
Managing chronic pain is a beast.
Good luck with the Mayo clinic, I wish I had access to something like that where I am. The medical professionals here are beyond worthless.
Honestly not the worst for me. They work really well. My pain went from constant 5 and going up to 10 with a flare-up at least once a day to constant 1 with an occasional flare-up up to 3 or 4. And, unless this is caused by them, no major side effects.
I'm just dealing with appetite problems with naltrexone so I wondered if yours was an extreme manifestation. I'm sorry you're going through this and hope you get a solution soon.
I am sorry to hear that and I appreciate you coming up with that idea even though it doesn't apply here. Honestly, I don't think it's my medication anyway because I've been stable on it for a good five years.
Just tossing this out, do you think maybe it's gastroparesis? My husband ended up with this last year as a result of Ozempic and is joining a class action lawsuit against its makers for not making patients aware of this side effect. That's my only other idea for you is maybe nerve damage to your GI system.
Both are entirely possible. It's very hard to tell. Who knows? I have not had a doctor suggest either, but I have certainly had others say they were possibilities.
That said, based on my reading of gastroparesis symptoms, I think that is unlikely. Especially since my stomach is empty a lot of the time. I don't even want the liquids I am able to drink unless my throat and mouth are dry. I have to time them so I remember to take them.
Ok, just wondered. If you have nerve problems with TN I wondered if it might affect your GI system, but I'm def Not A Doctor. Best of luck to you OP.
Sure, no worries. Doesn't hurt to ask. Thanks!
I know you said no medical advice, but I'm not a doctor, so this is just advice.
Have you tried threatening your other organs? Like tell them you know that one of them is responsible and it's only a matter of time before you figure it out, and they saw what you did to your gall bladder and if they don't sort out their shit soon, they will be next. Tell them your gall bladder is in a mining camp in Siberia, unless Putin sent it to die in Ukraine.
Anyways, hope either this works, that you get over your fear of medical advice before you go to the Mayo Clinic, or that their selection of mayonnaises is enough to kick-start your appetite again.
Best wishes!
By the way, on a more serious note, since you can handle liquids, have you tried smoothies or something a bit heavier that you don't need to chew? Apologies if this has already been addressed, I didn't read much of the comments thread.
I will see what I can do about getting a gun surgically implanted.
As far as smoothies, some are way too thick, others I can handle. I think it depends on whether or not they put yogurt in it? I'm not a huge smoothie fan though.
Thanks for the best wishes!
So sorry you’re going through all of this. As an ER provider I feel so terrible for the patients I see with chronic gastrointestinal issues. I always try to do some things to broaden the differential (I’ve had some pretty clutch diagnoses of chronic mesenteric ischemia in cases like yours by doing a CTA instead of just a CT—usually on patients who have had multiple CT’s), but there’s only so much you can do with the resources available to us in the ED. I always place a GI referral, but I feel like most GI’s actually ignore the chronic stuff if scopes are negative. It really sucks knowing a lot of possible answers but not being the person who can test for them.
Hopefully Mayo helps. Almost sounds like you have some sort of GI motility issue—I wonder if your trigemial neuralgia is actually a more nuanced symptom of an underlying CNS/PNS unifying diagnosis.
Thanks. I'm also not in a big city, which limits what hospitals can do, and makes it less likely to have really good GI docs (because this is not exactly a desirable place to live). Mayo has far more diagnostic tools and that alone will make a big difference.
I think it definitely will. I’m at a large medical center and it’s always surprising what we’re able to do (that we consider to be basic) compared to rural places. Fingers crossed!
Thanks!
Good luck!
Just to be pedantic, FMLA is still unpaid at larger companies. Some companies might pay you, but it's not required by law.
I thought they had to when it was over 50 employees? Because they talked about that when I took it.
I work for a big company and took 3 months of FMLA a couple of years ago when our kid was born. It was unpaid. If I remember correctly, I couldn't even use my sick time since I wasn't sick. Maybe that's the difference?
No idea. It's moot now though. And honestly, I'm glad to be rid of that place. It was constant stress and low pay.
Sounds gross! Glad you're in a better spot now, and heading towards even better times.
In some ways a better spot. Certainly a less stressful one in terms of the day-to-day. And I'm really glad I was able to get my daughter away from her bullies.
On the other hand, being down to a single income replaced that stress a bit.
Also, I know it's stupid, but I have regular guilty feelings of not being able to contribute financially to the family. I've never had the male ego thing of needing to be a provider, my wife is much more educated than I am and has always earned more money than me and I'm fine with that, but I feel so bad that I can't contribute even though I do my best to contribute in other ways. And that's on top of the irrational guilt I feel for just being sick and putting my family through this even though I know that's out of my control. Hooray guilt!
But thank you.
You should be seen by the Mayo Clinic.
Ha! Now you're taking my medical advice.
Just kidding. I'm sorry you're going through that. It sounds nightmarish. I hope Mayo is the ticket!
I hope so too, thanks!
Hey Squid. I'm sorry I missed this post. I'm glad you are gonna get treatment at Mayo, and I'm also glad to see you're asserting an "I need support, not advice" boundary. It's inspiring, as I'm trying to do that for myself right now... because JFC, hearing proposed solutions is exhausting when what you really need is someone to listen and empathize. I'm just now realizing people cannot read my mind, so I guess I gotta be direct.
I wish you the best, man. DM me any time you need to vent, even if it's just a quick "argh dammit this sucks!" I won't ever recommend Vitamin F supplements or whatever
Thanks, I really appreciate it. It sounds like you need some solutions yourself, so I hope you get them.
I had something similar, but instead it was feeling full and nauseous with just a few bites. Food smells were the worst, and can still trigger nausea for me. I never really got around to figuring out the cause because I was bad at getting healthcare for myself. But it cleared up, weirdly, around the time I had my wisdom teeth taken out. I got my life back after that, and I hope you do too very soon.
Wishing you the best and hope you get some answers with your upcoming visit.
Thanks very much! I was not good about getting healthcare in my 30s and it was a mistake. So I've definitely been good about seeing doctors right away ever since.
In my case, it can't be wisdom tooth related, because I only had 3 and they were all extracted around 1995. That said, it was a really shitty dentist who should have been sued for malpractice so who knows? Maybe he left a bunch of shards behind when he literally crushed one of the teeth to get it out. Seriously. He even told me he was going to do it. And I felt it too despite the Novocaine. I have no idea looking back on it why we didn't decide to sue that fucker.
This isn't advice or suggestions, but rather questions about your condition I'm curious about from your description. If this isn't something you want to discuss, I totally understand. Simply ignore this post. I certainly don't take any offense, and I hope you feel better.
You made mention in several situations about food smells triggering your symptoms. Is it just food smells or do any other strong non-food smells trigger your symptoms? I'm thinking of both pleasant and unpleasant non-food smells: gasoline, fragrant laundry detergent, fresh cut lumber, rotting leaves or grass
You made mention of the limits of texture. Does ice chips in your mouth trigger your symptoms? Does chewing gum trigger your symptoms?
1: Just food smells.
2: As long as I don't chew them, no. If I let them melt in my mouth it's fine. Chewing is not the only issue. I cannot bring myself to swallow liquid things that are especially thick, let alone solids. But having to chew it is enough to make it too unpleasant to have in my mouth. As I said, it is described by my doctor as anorexia but with a physical cause. It is a total aversion to food. My whole body tells me not to eat. Period.
You haven't mentioned any conscious aversions to food, so I can barely imagine the frustration of consciously knowing your body needs nourishment but your body being totally uncooperative. Your body gets to use your higher brain functions to identify what is food and not, but then is unwilling to take it in even though you want it. That sounds hellish. I'm sorry you're going through this.
Its almost like your body is identifying food like its poison and trying to keep it out of you to save your life.
It's not exactly that I know I need nourishment because I never feel hungry, but I can definitely look at all kinds of food and really wish I could eat it but I know I can't.
You understand consciously and intellectually that your body requires calories or you'll starve to death, but your body signals and instincts are uncooperative.
Basically, yeah.
Since this condition gets to know something has nutrition (because you know the thing does), what would happen if you consumed something with zero nutritional value. Something that would have maybe fiber, but no nutrition? Its certainly not food because you can't live on it. There'd be nothing your digestive system could take out of it. It would just pass through.
It would most likely be solids, so would that trigger the symptoms or could you get it down because its not foo?
There's nothing really to trigger because it never isn't true that I don't want food except for maybe a second or two here or there where I think, "I could e- no, I couldn't eat."
But my wife gave me a single strand of cooked spaghetti to try and I had to spit it out.
My only basis for understanding is myself and what I think may be normal hunger and satiation response. When I feel hungry, I want to eat until satisfied. You're communicating you don't (rarely?) feel hunger response, so you don't (rarely?) feel compelled to eat food. This makes sense to me.
When I've eaten to satiation, I get a feeling of being physically "full" but further, that I'm not missing anything. However, for example, if I'm low on protein I can eat carbs endlessly until I feel physically sick to my stomach and still be hungry for protein until I eat some and reach satiation. You're communicating that you never get to either of these stages because you have an active aversion to the intake or presence of food. So its not just the hunger response you're missing, there's and additional component causing you to be physically uncomfortable with consuming food, which compels you to not eat and even spit out food you have in your mouth when you try to push beyond the repulsion.
Lastly, even when I've eaten to satiation, I can still choose to continue eating, such as a really good tasting dessert, but usually regret eating too far beyond satiation. This is one that I can't square with how you describe your situation with this example:
You're nowhere near satiation since you don't eat, so its not that response. You haven't eaten beyond satiation, since you haven't eaten anything, so its not that response. Your body is finding aversion before all the other normally expected gates are passed through.
One more question:
I have to take pills every day and it is with great difficulty and discomfort. But eating food is also a very different process than swallowing a tablet. Much like drinking liquid is a different process.
As far as sensations, I have no sensations. That is part of the problem. No sensation of hunger, no sensation of being full or not having anything in my stomach. I have to time when I drink things every day or I will just not think about it until my mouth and throat are dry and I need something to drink. In some ways, it's as if I have no digestive system.
Damn bro maybe you just have a cute lack-of-weedism.
Seriously though hope you feel better. Never stop shitposting.
Thanks!
Have you tried healing crystals?
Joking aside, I had an issue which made me regurgitate loads of stuff, so I can relate.
Hope it gets sorted ASAP. It's really frustrating when they can't find the cause.
That sounds even worse than what I'm going through. I'm glad nothing ever comes up. I hope you're doing better now!
I can no longer eat pizza, so that's debateable. /s
Hope you find a solution too.
Ever since my mid-30s, pizza often gives me diarrhea for some reason. Doesn't matter where I get it from either. So I ate it like once a year just as a treat knowing I would regret it the next day. That said, I'd be happy to regret it at the moment.
Well that sounds pretty miserable all right. I went through something similar when i had hepatitis and wondered why i craved food but didn't actually want to eat it once I went through the trouble of making it, but if that's what you have they would have detected it much earlier than this.
At least you're getting nutrition from your nutritional drinks and Gatorade. For people with gastric conditions that's usually the route that is prescribed. It's a rotten thing to have to go through but I wish you the best going forward with this.
Interesting. I had both mono and hep A at the same time when I was a teenager (apparently not uncommon). But I don't remember not being able to eat. And yeah, Gatorade is definitely important. Which sucks because I hate how sweet it is.
You might be able to replace the Gatorade with Morton's lite salt added to your flavored drink mix of choice (I personally buy True Citrus drink mix powder in bulk 500 pack boxes, since it's cheap, has no bad ingredients, and has no added sugar, so you can sweeten it yourself).
There are guides online that describe how much Morton's lite salt to use to equal Gatorade.
Interesting. Thanks!
G2 is less sweet. Hell, that's a whole market segment at this point, so maybe there's something that hits your palate better. Pickle juice is probably still around somewhere too.
For the shakes, maybe look up various protein smoothie recipes if you get sick of Ensure. You can add milk or water to get the protein powder to a consistency you prefer.
My worry about shakes is the thickness. Ensure is almost too thick.
The Gatorade I usually drink is the sugar free purple because it tastes really close to grape juice, so I can stand it. I was told I should drink the sugar free kind by my doctor.
I noticed Gatorade has a Pedialite now. I decided to try it and I could tell it was less sweet, maybe more salty.
I don't know if I'd like that, but I will look into trying it.
When I had hepatitis (and I'm still not sure how I got it) I'd feel hungry, but when I actually had food in front of me, no desire at all to eat it. But I still forced it down as much as I could.
Have you tried some of the other brands of electrolyte drinks? I had to pick one to mix with that powder they give you for colonoscopy prep about four years ago - and it wasn't gatorade, i think it was Power something or other. And it was quite good without being oversweet.
Anyway best of luck, I've had GI issues for most of my life so i know what a horror show it is.
Thanks. I hope you find something to help you with your own GI issues.
Just have to deal. It hasn't gotten better but I've learned how to navigate thru life with it.
All I can say is I'm sorry you're going through all this and the pressure it has put on you and your family.
I really hope you're able to nail down the source of this, having an "unknown malady" is the worst, I've been through it at least three times with my partner where each time it took literally years for doctors to figure out what was happening. It can take a lot of time, but if you keep reaching out to specialists, and you keep ruling out things it isn't, eventually you'll find something that works.
Coming from someone else struggling with their and their families health: I wish you and your family nothing but the best, and I sincerely that you either find a solution or a manageable way to cope.
It took me a second to figure out if you're my wife or not as that's exactly my story too. It's depressing how frequently I encounter people, typically Americans, that took years or even decades to get a diagnosis. My issues started around the age of 5 and I didn't get a diagnosis until 31 years and literally dozens of doctors later.
The doctor that diagnosed me didn't know how to handle it or who to send me to. It took nearly a year to find a doctor who was willing to even try to help. Even with a helpful doctor, I still had to piece together an effective treatment plan myself through trial and error plus a ton of literature review.
Three times? Damn. I've gone through it twice now and that's been really awful too. I hope you and your families' health do better soon.
A few years ago I went to the Mayo Clinic in December (not as a patient) and it was in the coldest place I have ever been. I say that as someone from a place with a relatively cold climate. I guess it won't be as cold in March but bring warm clothing.
Thanks. I've been to Minneapolis several times, so I know what to expect there.
Nothing good, nothing bad. Like Chernobyl
Is that FMLA why you've been posting up to 8 times daily? Cuz I see you everywhere on lemmy lol
Yeah, sounds like you are a real life zebra. I'm hopeful that you can get some answers. Looking forward to a future post celebrating them.
I'm good with being a zebra!
This seems awful. Life sometimes is like that. I will pray for your wellbeing and wish you luck.
Quick question: Does smell of food itself make that reaction? Something like beacon candle.
Thank you for your kind words.
Re: the reaction, if you mean the heaving, no. That just happens (almost) every morning. Occasionally other times. Otherwise, there is no reaction, just aversion and disgust. Many food smells disgust me, but some do not. Savory smells are far worse than sweet. A cafe with a coffee smell does not bother me at all.
As someone also with a largely mysterious, if diagnosed, medical condition, have you tried meditation?
Just kidding! I get tons of well meaning, often worthless advice, but that's by far the most common. I'm like, bitch, I meditate so goddamn much I'm giving the fucking Buddha pointers. Meditation is the only reason I'm not throwing you (and maybe myself with you) out the window right now.
If I may give you one non-medical suggestion from someone who has been there and to some extent still is there, it'll get better as long as you don't give up. You have to be dogged about improvement and it won't be fast or easy, but it'll be there if you put in the work. People who don't understand will think you're being crazy and obsessive, telling you that you need to just come to terms with your condition. Coming to terms is a part of it, but there's always, always something to try. Improving my condition is my biggest hobby and primary job.
I've been plugging away at improving my health for four years now and went from barely being able to function to being 80% normal. I'm working full time again (I know, oh joy) and I can do a lot of the things I used to be able to do. You'll get there, just keep at it. Let me know if I can help or if you ever need to talk, even just to vent.
Thanks very much. I hope you get a diagnosis yourself. And I am definitely determined to get this fixed. I don't really have a choice. It's be determined to improve or starve to death.
They may not have answers for you at Mayo Clinic, but don’t be discouraged! Keep fighting until someone can help you figure this out!
They may not, true, but I will have to work hard at figuring out my next step because I honestly don't know where else to go, at least in the U.S.
That's terrible, and I'm saddened to read about this going on still.
As misery loves company... I struggle with various health problems that are also hard to diagnose (autoimmune in nature). Doctors weren't super helpful. I blew through almost all of my savings which took a lot of effort and penny pinching to gather. I was unemployed from November 2020 through July 2023, and I wanted to not live anymore. I was never quite suicidal, but I was on that path. Things got dark.
Little by little I made progress. Gluten turned out to be a major contributing factor in my overall bad health. Cutting it out of my diet wasn't easy or enjoyable, but it was a massive change for the better. I was no longer in crippling pain, overwhelming fatigue and my anxiety vastly improved. I found employment again!
Just as I thought I was turning a corner, I get hit with a rare genetic heart condition. I was in danger of having a stroke without knowing it. Now even though there is a new medication I am taking to address that condition, it comes with a lot of potential interactions with other medications. That means I had to give up the one other medicine that helped me get through my chronic pain and other issues, and in so doing I have discovered even more food intolerances are to blame beyond what I already knew. I can now eat basically nothing prepared from a store or restaurant if I want to be functional.
Even so, day by day I manage to get a better grip on my health issues that have plagued me for most of my life. To get there I had to persevere beyond that I had previously thought of as being my limits. I believe this is where you are right now, unfortunately. I wouldn't wish this fate on anyone (okay, maybe a certain fat, shit stain ex-president and his toadies).
I hope you find your answers! Keep us posted! I'm rooting for you!
I'm so sorry to hear that. Honestly, that sounds so much worse than what I'm going through. As far as I know, I'm not in any sort of life-threatening danger. I'm not starving to death, at least not yet.
Not being able to get things from restaurants really sucks too. I'm definitely a foodie in that I love going to any restaurant I can find that might be unusual in some way, be it because it's from a certain country or ethnicity or just because it has a famous dish that isn't known elsewhere. We also liked to go out to a diner as a family for a Sunday breakfast every so often. If I was back to eating but I couldn't do that anymore, I'd be very unhappy about it.
I'm not sure I'd call it worse. At least I have reasons for my problems. You're still dealing with the unknown. For me, that's when things looked their bleakest. Don't give up, okay? If I managed to improve, I think you can too.
Thanks, I really appreciate it.
Are you familiar with marijuana? Have you tried getting high? It seems like it might be a good idea.
I've heard a thing or two about it, yes. High, you say? I will have to see if I can get ahold of this... Mary Jane you called it?
I mean, it's unironically worth a try if you can try it risk-free. The munchies are a real thing, and many people find marijuana helps with nausea, though some find the opposite. Personally, though, smoking made me paranoid (I'm still VERY sure those two guys in Amsterdam were laughing at me, but wife is convinced otherwise), and edibles made me sleepy, not that edibles would be much of an option for you.
All that said, the only real medical advice is to keep getting medical advice. You're clearly not dealing with something normal, so keep an eye on it for your and your family's sake, but if it's not killing you, then maybe you just ride this thing out. I'm of a similar age, and while I don't have anything nearly as dramatic, dealing with the lifestyle changes forced by aging is just sort of our lot in life now.
Hang in there, FlyingSquid@lemmy.world. Rooting for you.
Unfortunately, it was tried before this started. I already use weed pretty regularly (I vaporize, I don't smoke). It does help with the nerve disorder, but it has no effect on my appetite. I agree it can help with nausea, but nausea isn't an issue.
And before anyone asks, it is almost certainly not cannabinoid hyperemesis syndrome. One, because I don't feel worse after I vaporize. Two, because I don't share most of the symptoms. It's been discussed and ruled out.
Oh well, best of luck at Mayo!
Thank you!
Not even once, OP! You'll think you can fly out windows!
I can fly out of windows? I'm a flying squid!
Damn it. I'm too late. The hallucinations have already taken him.
Someone who already deals with food nausea should be avoiding Marijuana as far as I'm concerned.
I'm rooting for you - I hope you find answers at Mayo!
Thank you!
I'm sorry your going through this. I had a stomach ulcer and couldn't eat much solid food during that time. I survived on ensure, plain white rice and bananas. I definitely feel for you and hope that you are able to get some answers. My husband has been down the mystery medical problem route and it's maddning. I wish you the best of luck, Mr. Squid.
Thank you!
I'm so sorry you're going through this. Ive had periods of pretty strong food aversion and nausea to the point I was underweight because I just really Did Not Want to eat food. I had to drink meal replacement shakes because the nausea was so bad. I never experienced the heaving or complete inability to keep food down. Actually throwing up was kind of rare but did happen.
I had always taken my enjoyment of food for granted and I still go through ups and downs with my food aversion. Currently I'm able to enjoy many foods I usually do though I get sick of eating very quickly. I'm happy about that. I can't imagine going through what you're going through. I know when I had my struggles most people just didn't understand and I felt super unheard and invalidated. I hope that you at least feel heard and supported, and here's to potentially being able to enjoy solid food again one day.
Wishing you the best ❤️
Absolutely, me too. I loved going out to restaurants and trying food from different countries. I'm sorry you went through something similar and I hope you find a solution. Thanks for the best wishes!
That's a very interesting story.
I too have trouble eating anything solid sometimes. It's just too much. I couldn't digest it, I couldn't even swallow it. But fortunately, the supermarket where I live sells liquid food, basically like a milkshake, for low price over-the-counter. So I drink that a lot. It's not "normal", but it works for me. Cheers.
Also, what do you personally believe the reason is? Do you have any spiritual thoughts on this?
So, I'd like to explain my personal view: In older times, it was believed that spirits sometimes take possession of humans. These humans are called "schamans". That causes a series of symptoms, including: dry heaving (especially during the "initiation" period - the initial phase). This is supposed to "clean the body (and also the mind)". The stomach is seen as the "center" of the human (because it is almost completely in the center of the human) and the dry heaving is kinda "throwing out" bad thoughts from your most inner self. During that time, to not complicate the process, people don't eat solid food, because eating solid food would require greater physical strength, and the stomach is busy. TL;DR: Dry heaving is IMO a spiritual "cleaning" ritual, and not eating solid food simplifies the process.
Sorry, I am an atheist and a skeptic, so I'm afraid that is not something I personally buy into (I am not judging you for it, everyone needs to decide this sort of thing for themselves as far as I'm concerned).
I do have one idea which I am going to talk to them about which is if it could be something in my throat since there's never nausea. The heaving sure seems to come from the throat more than the stomach.
Yeah, I get that, and I don't want to be an obnoxious walk-from-door-to-door guy. I'm just telling you about my own observations.
I was in a pretty similar situation than you are in right now. I get the pretty strong feeling that there are parallels. I was an atheist myself when I was younger, but my own, personal observations and contemplations made me change my mind. So it might be something for you, too.
Again, I don't wanna be obnoxious, but I have many things to say, and maybe they would speak to you.
I appreciate it, I do. I just don't think this is a road that I feel like I would be able to go down. I'm far too cynical.
Okay then, no worries. In my eyes, the constant dry heaving is a purification technique that helps to remove the impurities from the soul of the human ex.1. So, you shouldn't feel too bad about it. One day the symptoms will disappear probably, and you will feel better than before.